Policy Brief

Commissioning a Comprehensive Federal Study on the State of Caregiving for Severe Autism

A Legislative Ask for the 2026 Authentic Awareness Autism Assembly

Washington, D.C.  ·  July 2026

National Council on Severe Autism  ·  ncsautism.org

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The Ask

A government that cannot count this population cannot budget for it, cannot find the waste in the services that already turn them away, and cannot plan for the wave of need now cresting.

Why Now: A Crisis Hiding in Plain Sight

There is no federal data on the family caregivers of individuals with severe autism. None. No prevalence count. No economic-impact analysis. No longitudinal tracking of health outcomes. The Elizabeth Dole Foundation and the RAND Corporation built a decade of rigorous evidence on military caregivers, evidence that exposed costly inefficiencies and guided smarter, more targeted policy. The families caring for individuals with severe autism remain invisible to the research establishment and, as a result, to the policymakers who could help them.

The gap is not for lack of federal attention to autism. The 2024 Autism CARES Act authorized nearly $2 billion for autism research and programs, and in 2025 the government added new NIH and CMS autism data efforts. Not one of those dollars measures the families who provide the care. The people holding this system together remain uncounted.

The NCSA 2025 Family Caregiver Survey of 1,289 families across all 50 states reveals the scope of the crisis:

These families are not navigating a temporary season of caregiving. Over 65% of survey respondents are aged 45 to 64. Many began caregiving in their twenties and will continue until their own death or incapacity. The research literature overwhelmingly studies short-term, intergenerational care, an adult child helping an aging parent for an average of five years. The families of individuals with severe autism provide intensive, hands-on, often physically dangerous care for five decades or more.

The Precedent: How Research Changed Everything for Military Caregivers

Two numbers, a generation apart, tell the same story. For veterans, better body armor and battlefield medicine changed the fatality-to-wounded ratio from 1 in 2.6 in Vietnam to 1 in 7.2 in Iraq: far more survivors, each needing years of complex care. For autism, broader identification changed the rate from roughly 1 in 500 children in the late 1990s to 1 in 31 in CDC’s 2025 report. Both populations swelled. Both needed intensive, lifelong, hands-on care. What separated them was the response. The Elizabeth Dole Foundation offers the proven blueprint, and its model followed a deliberate sequence NCSA is now positioned to replicate.

Step 1: Commission rigorous, independent research

The country invested in the families already doing the work rather than build institutions to hold a generation of survivors. The 2007 Dole-Shalala Commission, co-chaired by former Senator Bob Dole, put those caregivers at the forefront; the Caregivers and Veterans Omnibus Health Services Act of 2010 trained and paid them. Senator Elizabeth Dole, who founded her foundation in 2012, then commissioned RAND to count them. Hidden Heroes: America’s Military Caregivers (2014) identified 5.5 million Americans providing roughly $14 billion in unpaid care each year. The 2024 follow-up found 14.3 million military and veteran caregivers contributing at least $119 billion annually, with 43% of those caring for service members and veterans aged 60 and under meeting criteria for probable depression.

Step 2: Turn evidence into a named federal priority

The count did not gather dust. The Foundation’s sustained evidence and advocacy moved military and veteran caregivers from invisible to a federal priority, culminating in the 2024 Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act (Public Law 118-210), which carries her name. The broader federal caregiver landscape advanced over the same period, and it is worth naming accurately:

• RAISE Family Caregivers Act (2018): sponsored by Senators Susan Collins and Tammy Baldwin and Representatives Gregg Harper and Kathy Castor, it directed HHS to develop the first National Strategy to Support Family Caregivers, released in 2022.
• VA caregiver program: the Program of Comprehensive Assistance for Family Caregivers, created in 2010, was expanded to veterans of all eras by the 2018 VA MISSION Act.
• Senator Elizabeth Dole Act (2024): the law most directly anchored to the Foundation’s evidence and advocacy, it streamlined home and community-based care and invested in the caregiver workforce that keeps veterans out of expensive facilities.

Step 3: Build a sustained advocacy infrastructure

The Foundation did not stop at a single report. It deployed Dole Caregiver Fellows in scores of advocacy meetings with legislators, launched the Hidden Heroes coalition, and embedded caregivers in the policy conversation. Each win built the foundation for the next. Severe autism families met the same swell with the opposite response. The deinstitutionalization movement, which the 1999 Olmstead decision accelerated, moved people with the most complex needs out of state-run developmental centers and toward community living. The centers closed, and the trained staff, medical oversight, and round-the-clock coverage closed with them. Care fell to families. No commission named these parents a priority. No agency trained them.

Without a comprehensive federal study, there is no data. Without data, there is no policy. Without policy, families remain alone.

The Integrity Test the VA Already Passed

The fear in Congress today is that home-based caregiver benefits invite waste. That fear is not unfounded, and the VA’s own program proves both the risk and the remedy. In its early years, the Program of Comprehensive Assistance for Family Caregivers ran unevenly. The Government Accountability Office found that VA staff misapplied eligibility criteria and missed the required 45-day determination window for roughly 65% of veterans reviewed in 2017 (GAO-19-618). Access depended on which facility a family walked into. Prosecutors pursued the abuses.

Congress did not respond by ending the program. It responded by measuring and standardizing it. From 2018 forward, the VA MISSION Act and the rule that implemented it set a single national eligibility standard, retrained staff, and built the data systems to apply it consistently. The benefit grew more honest and more durable at once.

Severe autism caregiving sits at that same pre-reform moment, multiplied across fifty states. Medicaid Home and Community-Based Services (HCBS) pay one family several thousand dollars a month to care for a child and pay another a small fraction of that, while a third state bars caregiver pay entirely. That inconsistency is not a reason to end the support. It is proof that no one has studied the population well enough to set a fair, fraud-resistant standard. Paying for ordinary parenting is not the goal. CMS already defines extraordinary care as support beyond what a same-age peer needs, required to avoid institutionalization, and driven by disability. A study gives Congress the data to draw that line. The VA reached integrity through data. Severe autism caregiving gets there the same way.

What the Study Should Examine

Recent peer-reviewed research, including a 2026 study in the Journal of Psychosocial Nursing and Mental Health Services, points to four critical and understudied domains that should form the core research domains of any comprehensive federal study.

1. Access to and exclusion from services

The NCSA survey reveals a system that excludes the people who need it most. Nearly 8 in 10 families (79%) have been told their child is “too severe” or “not a good fit” for services. More than half (54%) have had a child discharged from a provider over behavior. Among families who need in-home support, only 21% report reliable, consistent staffing. A comprehensive study must document the full scope of service exclusion, map the workforce gaps, and quantify the cost of families serving as the de facto service system.

2. Physical and mental health of caregivers

The RAND military caregiver study found 43% of caregivers for service members aged 60 and under met criteria for probable depression. We have no equivalent data for severe autism caregivers, yet every indicator points to a burden at least as heavy. Sixty-three percent of NCSA respondents have already navigated a behavioral or psychiatric crisis requiring outside help; only 14% said the response suited their child’s needs. These caregivers face daily physical risk from aggression and self-injury, chronic sleep deprivation, and isolation. The study must assess depression, anxiety, chronic disease, injury rates, and mortality risk, and compare outcomes to the general population and other caregiver cohorts.

3. Aging and the long-term implications of caregiving

Here severe autism caregiving diverges most sharply from every other caregiving population. Over 65% of respondents are aged 45 to 64, with another 18% aged 65 and older. They face a question no federal program is designed to answer: what happens when I can no longer do this? Only 12% have a concrete plan; half say flatly that their current arrangement cannot last. The study must examine the aging trajectory of both caregivers and care recipients, the financial devastation of decades of reduced or forgone employment, and the catastrophic gap in residential options for adults with severe autism.

4. What the care requires, and how families provide it

No one else has been willing or able to provide this care, so families provide it, most without any formal training. That proves it can be done, and it means the knowledge of how to do it lives almost entirely with them. The study must document what this care actually requires day to day: the skills, routines, behavioral and medical supports, and safety practices that keep a person with the most complex needs safe, regulated, and cared for with dignity. Captured in enough detail, that knowledge becomes a blueprint a trained workforce can follow, so the care does not disappear when the family no longer can.

Proposed Legislative Framework

Authorization

Direct the Secretary of Health and Human Services to commission a comprehensive, nationally representative study on family caregiving for individuals with severe autism spectrum disorder. House the effort in the Administration for Community Living, which already convenes the RAISE Family Caregivers Act Advisory Council, and draw research support from partners such as the National Institutes of Health and the Agency for Healthcare Research and Quality. The study should be conducted by an independent, nonpartisan research organization with demonstrated expertise in caregiver research, such as the RAND Corporation, which conducted the landmark military caregiver studies.

Scope of Research

The study shall, at minimum, examine:

• the prevalence of these caregivers, including demographic characteristics, geographic distribution, and the duration and intensity of caregiving;
• the nature of the care itself: the skills, routines, behavioral and medical supports, and safety practices families use to keep individuals with the most complex needs safe, regulated, and cared for with dignity, documented in enough detail to inform training and replication by a formal workforce;
• access to and exclusion from services, including rates of denial, discharge, and workforce shortages in specialized care;
• the physical, mental, financial, and social health consequences for caregivers, with comparison to the general population and other caregiver populations;
• the economic value of the unpaid care, including forgone wages and out-of-pocket costs;
• the aging trajectory of caregiving dyads, including long-term residential planning, financial security in later life, and the availability of appropriate housing;
• the experiences and unmet needs of caregivers providing care for more than one individual with severe autism.

Reporting and Recommendations

The study shall produce a publicly available report within 24 months of enactment, including policy recommendations for Congress and relevant federal agencies, and a research blueprint identifying priority areas for follow-up investigation, modeled on the RAND blueprint developed for military caregivers. HHS shall provide a response to Congress within 180 days of the report’s publication.

Appropriation

Authorize such sums as may be necessary, with an initial appropriation of $5 million for the study and its research blueprint. Of the nearly $2 billion Congress already approved for autism through the 2024 Autism CARES Act, we ask only that $5 million be targeted to studying these caregivers. Measured against the spending it would inform, the billions already directed through Medicaid HCBS without severity-specific data, this is among the highest-return investments Congress can make. It is the cost of program integrity, not an addition to the deficit.

What This Study Will Make Possible

The Elizabeth Dole Foundation proved that counting a hidden population can turn reactive spending into proactive policy. The evidence it built, sustained over a decade, made military caregivers a named federal priority. A study on severe autism caregiving would:

• quantify the economic value of unpaid family caregiving, care that would otherwise fall to far costlier government-funded programs and institutional placements;
• translate the skills and safety practices families have proven into a blueprint for training and replicating a formal workforce, easing the direct-care staffing shortage that leaves the highest-need families without reliable support;
• identify where current federal and state dollars are spent on services that exclude the highest-need population, and show where to redirect them toward what works;
• provide the data to inform Medicaid HCBS policy and reimbursement rates, which today lacks severity-specific guidance and so spends one-size-fits-all;
• establish the evidence base for proactive, cost-effective reform before the aging caregiver population reaches crisis and emergency spending becomes the only option.

Every policymaker can find their priority in this study. For those determined to root out waste in public spending, it locates the dollars lost to programs that turn the highest-need families away. For those determined that no vulnerable family fall through the cracks, it makes the uncounted visible. Sound stewardship and basic decency point to the same first step: study the population before the bill comes due.

A Note from the Families

When the Elizabeth Dole Foundation began its work, military caregivers were called “hidden heroes.” The name stuck because it was accurate. Millions of Americans were providing extraordinary care, saving taxpayers billions, with no recognition and no research into how to sustain them. The families of individuals with severe autism are hidden too. They are hidden in emergency rooms where crisis responders lack training. They are hidden behind the doors of providers who call their child “not a good fit.” They are hidden among the 88% of families who have no plan, and no path, for what happens when they can no longer provide care. A federal study will not, by itself, solve these problems. It is the first step that makes the rest possible. We ask Congress to take it.